While working for Stanford Pre-Collegiate Studies (SPCS) this summer, I met a disarmingly wise 13-year-old novelist. Flying home as an unaccompanied minor, she needed a chaperone to see her safely through the terminal and onto her plane, a responsibility requiring abundant patience, a government-issued ID and an inhuman tolerance for lukewarm airport sushi: my specialty. …

Dear Stanford, So here I am thinking my last column was a week ago and I’ve wrapped it up nicely when the Daily offers me a chance to write a senior reflection piece. Great, I think. Sentimental part two. But I say yes, as I do too often, and so find myself sitting at a …

Tackling Chronic Fatigue Syndrome

Two years ago, Tom Camenzind ’16 was a sophomore at Stanford studying computer science. He had a 4.0 GPA and summer job offers from Facebook and Dropbox. According to him, his “medical history was a clean slate.”

Then, in January 2014, he contracted a respiratory infection from which he never fully recovered.

In February and March of the same year, Tom had enough energy to complete assignments and projects but often needed to rest in bed for a day or two to have enough energy for the next day. But after contracting a second cold in April 2014, his post-exertional malaise, characterized by extreme levels of fatigue following mental or physical exertion, began to worsen.

Since late August 2015, Tom has been unable to spend more than 30 minutes at a time out of bed. He spends most of the day in his bedroom, where the lights are always off and the blinds are drawn. When he’s ready for his three meals, he rings a pager button, whispers to his parents what he’d like to have and then eats in a chair beside his bed. His speech is limited to simple words that meet basic needs.

“It takes energy to listen, to comprehend and to respond,” his mother Dorothy Camenzind said. “But he does not even have that mental energy [to sustain normal conversation].”

Once a voracious reader, Tom Camenzind hasn’t been able to read for a whole year.

Camenzind, now on his second year of medical leave, is one of about 2.5 million Americans with severe Myalgic Encephalomyelitis, more commonly known as Chronic Fatigue Syndrome (ME/CFS). According to Dorothy Camenzind, those afflicted with severe ME live in the “world of one room.” They experience “systemic exertion intolerance” and are also “sensory input intolerant.” The recovery rate for the disease is estimated at around 18 percent.

Despite the debilitating effects of ME/CFS on patients and their families, research on the illness has been historically underfunded. For decades, Dorothy Camenzind said, physicians have failed to recognize ME/CFS as a real disease, relegating it instead to a form of psychological or psychosomatic illness.

With inadequate institutional research funding, much about the disease remains a mystery — its molecular mechanisms have yet to be identified, and appropriate treatment options have yet to be developed.

Stanford’s Research Initiatives

The Chronic Fatigue Syndrome Research Center at Stanford is led by Ronald Davis, professor of biochemistry and genetics and director of the Stanford Genome Technology Center. The Center’s members include scientists, specialists and physicians across many disciplines, including Michael Snyder, chair of the Stanford Genetics Department, and Jennifer Frankovich M.F. ’05, M.S. ’09, director of the PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) Program at the Stanford Children’s Hospital.

Davis claims the Center’s foremost goal is to identify molecular biomarkers for ME/CFS.

“The biggest problem really is that we don’t know enough [about the disease],” Davis said. “The way to solve that is to collect a lot of data. [The data] needs to be molecular data, not phenotypes. We have a lot of [phenotype] data; we know how people feel, what they can do and so forth. We need molecular data.”

In addition to searching for potential biomarkers, Davis’ research group will also study the roles of proteins, mycotoxins, heavy metals, cellular metabolites and the immune system in relation to ME/CFS.

“It’s very unlikely that we’ll find a single biomarker for the disease; it may be a combination,” Davis said. “We’ll pick those [biomarkers] out and actually test them on a large population, but we need to figure out what it is we need to look for. It’s going to involve looking at [and sequencing] the genome [and] looking at expression in the white blood cells.”

The research team’s current model proposes that ME/CFS results from a type of mitochondrial dysfunction.

“We’ve seen some evidence of mitochondrial dysfunction in the metabolites,” Davis said. “You don’t see that in mitochondrial diseases, so it’s probably not a genetic effect. No one has seen this kind of defect before, but it’s something we have to continue to explore. It would explain everything [including the brain function and fatigue].”

“It would explain why those doctors are totally wrong when they say [to ME/CFS patients], ‘It’s all in your head,’” he added.

Previous obstacles in obtaining ME/CFS research funding

In March 2015, Davis submitted two grant proposals to the National Institute of Health (NIH) for funding to study patients severely affected by ME/CFS. Neither application was able to move past the NIH’s pre-proposal stage.

“They weren’t even sent out for review,” Davis said. “One of [the responses said we] should look at severe patients, but that’s what the grant was all about.”

Another response criticized the lack of data points in Davis’ proposal.

“They said we’re not making any neurological measurements like NMR scanning,” Davis said. “This is a proposal about severe patients that are bedridden. You can’t take them into the hospital and do a scan.”

The difficulties Davis and other world-renowned scientists have faced in obtaining funding for research initiatives on ME/CS reflect the overall lack of NIH-supported funding for the disease.

CFS has consistently ranked as one of the lowest NIH-funded diseases for the past five years. In 2014, the NIH devoted $5 million to ME/CFS research, a figure that amounts to less than $5 per patient. Comparatively, for the 1.2 million people living with AIDS in the United States, the NIH allocated over $2.9 billion dollars to HIV/AIDS research that same year, or about $2,482 per patient. Yet, physicians who treat both ME/CFS and HIV patients often agree that chronic fatigue syndrome is the more debilitating disease.

“The level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure and chronic obstructive pulmonary disease,” said William Reeves, a former chief of the Viral Diseases Branch of the Center for Disease Control (CDC) in a 2006 press conference. “The disability is equivalent to that of some well-known, very severe medical conditions.”

Renewing focus

Fortunately, “the tide has turned,” Davis believes.

According to Davis, general understanding of the complexity and severity of ME/CFS has been furthered. He credits a comprehensive report created by the Institute of Medicine (IOM) in February as “the major turning point of that tide.” The report, titled “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,”compiled research findings from virtually every CFS-related publication (approximately 9,000 in total) and proposed a detailed set of diagnostic criteria to enhance understanding of ME/CFS among the public, physicians and health care providers.

Two months ago, the NIH announced its plans to increase ME/CFS research in a news release detailing new actions by the institute.

“Of the many mysterious human illnesses that science has yet to unravel, ME/CFS has proven to be one of the most challenging,” said NIH director Francis S. Collins in the release. “I am hopeful that renewed research focus will lead us toward identifying the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed.”

Courtesy of congress.gov

Further, in a budget agreement announced on Dec. 13, 2015, funding for the Centers for Disease Control’s CFS research program was restored to the full $5.4 million after being slashed to $0 by the U.S. House Committee on Appropriations last fall.

Personal perspectives on ME/CFS

These institutional initiatives to tackle chronic fatigue syndrome research have the potential to bring real change to ME/CFS patients, like Tom Camenzind and Davis’s own son, Whitney Dafoe.

“[Whitney] can’t communicate,” Davis said. “He can’t talk; he can’t read; he can’t write. He can’t listen to spoken words. He can’t look at something written. He can’t even look at letters. So I have to wear clothes that have no letters on them.”

Davis pointed at the black shoes he was wearing.

“See — this had ‘North Face’ on it. I had to grind it off because if [Whitney] saw that, if I walked in his room with that on [my shoes], he would try to interpret it, and that would exhaust him,” Davis said. “Basically, his brain is just on the very edge of surviving.”

Tom Camenzind’s condition has also continued to be severe.

“When he is at his sickest, he is unable to tolerate communication (verbal or nonverbal) or touch,” his mother said. “He hand-motions ‘leave me alone’ with a hand motion for me to leave the room. When he is slightly better, he can whisper some limited conversation, smiles, nonverbally manifests his humorous self and welcomes and reciprocates a warm hug.”

Dorothy Camenzind shared insight on the frustrations and challenges of finding therapies.

“Since he worsened shortly after starting both of the experimental medications that he tried this year, he now opts for no more experimental medications and is following the medical mantra ‘Do no harm,’” she said. “Tom’s and our hopes lie in current and future research — both into understanding the disease and evaluating treatments.”

With renewed focus on chronic fatigue syndrome by the NIH, increased CDC funding and strengthened public support, the hopes of ME/CFS patients like Tom are one step closer to being fulfilled.

“Our hopes and Tom’s hopes are that one day he will feel better, be able to participate in life and contribute to the world,” Dorothy Camenzind said.

Here’s a link to the Chronic Fatigue Syndrome Research Center at Stanford, where Ron Davis is the director. Stanford only takes 8%, a special deal we arranged with them. All donations go directly to his CFS research and is part of the End ME/CFS Project. Thank you so much. We want to make this happen fast, to help all those suffering from this disease as fast as possible!

“It takes energy to listen, to comprehend and to respond”
I finally realized this just recently when I was having problems with phone conversations. I found it difficult to talk, listen, and think of something to say all at the same time. These are things nobody gives a second thought to.

Recently on my birthday I had 4 phone conversations and it wiped me out for days basically bed ridden. I’ve been dealing with the disease since 2001 and I’m noticing a frightening trend towards younger people becoming stricken.

It’s long past time for the NIH to fund research into this disease. The pittance of 5 million a year for CFS while HIV?AIDs gets 2.86 billion is disgusting and there are far too many becoming afflicted with this horrible disease.

My name is Ahmet Gokcek, I live in Palo Alto and I had chronic fatigue syndrome 12 years ago and similar to Tom’s story I had a bad cold that lingered and never really went away. I had ups and downs for a year, visited 8-10 different doctors, nothing really came conclusive from my tests. Some doctors said I had mono, others said I had lyme disease, etc… The fatigue made it hard to work as electrical engineer for a high-tech company in silicon valley and I took 3 months off work to try to get better.
This lasted 4 years and it was getting worse and all I wanted to do was stay in bed all day. But I had a family with two kids and I had to find a way to get health and get my energy back and be a functional member of society.
I read tons of alternative books and things changed once I changed to a raw, vegan gluten free diet. I also took many different herbs, vitamins and drank lots of green juice. I did colonics, acupuncture, ozone treatments and vitamin C IVs. I got my health back and began to run play basketball. Now I run over 20 road races a year (5/10k’s and half marathons). I play full-court basketball 2-3 times a week and have my energy back.
This is a true story and I just want to share my story to give others hope. I was losing hope because after any years of feeling tired, cold, sick all the time I had many moments that I wasn’t sure I’d ever feel like my old self again. Diet is the key and I still maintain an 80% raw diet and completely vegan/gluten free. I drink green juice all the time and people make fun of me all the time.
If you want to learn more about my journey then feel free to contact me at 408-410-2155 and this is a genuine real story and I don’t sell anything nor do I sell any services. I’m an engineer in Silicon Valley, have two kids at Paly HS and just want to give hope to others.

Dorothy Camenzind

Thank you very much for giving hope to many and taking the time to share-

Scott

“physicians who treat both ME/CFS and HIV patients often agree that chronic fatigue syndrome is the more debilitating disease.”
As someone with both ME and HIV, I can back up that statement. I was a national triathlon team member with HIV, then I got ME. Now I can’t walk up 2 flights of stairs. HIV got research funding. ME got squat. That’s the difference.

CureCFS

Please see the first comment and link posted by Janet Dafoe to donate to Ron Davis’ organization, the Chronic Fatigue Syndrome Research Center at Stanford. The Open Medicine Foundation is a different organization although they collaborate.

Guest

That’s great that you recovered, but with all due respect it when you say “all I wanted to do was stay in bed all day”, it sounds like you had depression with a lot of fatigue, but not ME/CFS.

People w/ME/CFS don’t want to stay in bed, in fact most can’t sleep, even though they need the rest, because their brain is so overstimulated, what we call “wired but tired”. So we go to bed, don’t sleep much at all, then wake up the next morning feeling like we ran 10 miles, even though we did nothing.

Anyway, I’m glad you recovered, and I agree that some natural treatments are usually very helpful, although I respectfully disagree that veganism is helpful for ME/CFS, unless of course one has been eating nothing but junk food. 🙂

Anon

Hey guest, you’re not a very good reader and I think you should think before commenting let alone diagnose someone based on their story. You sound like a close minded doc who would tell a cvs patient to suck it up.

Guest

Sorry, but I’m a patient for over 15 years. If you’ll read the story of this young man above, you should note that he can’t tolerate light or sound — that’s OVERSTIMULATION — not “sleeping” all the time.

Truth

Hi Janet – you’re right this is the only place to donate – please visit guidestar and look at the 990 report for omf I think you will be shocked with what you find.

Jo Best

From a European perspective, I was pleased and grateful to see that Professor Ronald Davis will be speaking at the 11th International Invest in ME Conference in London in June 2016 and participating in the 6th Invest in ME Biomedical Research into ME Colloquium, which precedes the public conference and is an opportunity for biomedical researchers from a number of countries to discuss, plan, share, their efforts to understand, test for, and treat ME/CFS – http://www.investinme.eu/IIMEC11-news-1101.shtml Thank you all.

Ahmet Gokcek

I had doctors say I had depression and prescribed me antidepressants but I was actually very happy and a competitive triathlete that was winning my age group and a few races. I won the Santa Cruz Sandman triathlon a year earlier and felt really happy at my job/marriage/family/financially etc.. If anything I wore my body out over-training. I never took the anti-depressants and the only thing that made me depressed was feeling sick and tired all day. I’ve been married 25 years, been at my current employer for 20 years and never hit that mid-life crisis thing that other people seem to hit. To say this was depression is completely false and I felt like staying in bed because I was cold, exhausted and sick, not depressed!
I did just about everything to get healthy again and I still get made fun of because I wont eat a piece of toast or hamburger. I drink a half gallon of green juice a day and eat most of my foods raw and uncooked and that is what helped get me my energy. It wasn’t overnight but I stuck with it and feel good again.

Beatrice Pham

Everyone has their own story of sickness and we shouldn’t doubt Ahmet’s story. But having known many with this illness, I would caution Ahmet to be careful (if he’s still reading!). There are stories of people who have made a full recovery — climbed mountains, went back to work, etc. — and then relapsed severely after months – years.

Also, it’s human nature to think that what they did or what they did recently was the treatment that helped them. Although the recovery rate is very low for ME (it’s less even than the 18% quoted above — it’s more like 5%: http://www.ncbi.nlm.nih.gov/pubmed/15699087), there are people who recover spontaneously. So recovery can occur irregardless of what someone does or doesn’t do but we don’t know what predicts who will or won’t recover. However, again, it’s human nature to attribute recovery to their own actions and not chance.

This isn’t to discourage people from trying various things to recover but it’s why we need more funding for ME/CFS research. It’s only through research that we will find treatments (beyond placebo and chance) that work for most or many people.

Ahmet Gokcek

I completely agree and if I deviate from my diet, don’t sleep well or get too much stress for long periods then I get mini relapses. They aren’t as bad as before but I feel some of the fatigue and coldness I used to feel. This has made me more vigilant about sticking to my diet, taking supplements and managing stress. I need to be like this for the rest of my life but I’ll take it and it’s a small price to pay to have my life back.
I also agree that I don’t know exactly what I did or combination of things to get me to feel better or if was a spontaneous recovery. The reason I feel diet was a big factor is the way I feel when I don’t eat well for a day (my not eating well might be too much cooked foods) compared to how I feel when I eat really clean.
I don’t have all the answers or a blueprint of how to heal but just want to share my story to give others hope and to explore some of the things I did.

Kandice

I’m so happy for you, Ahmet! I did all you did in alternative treatment (still do), and more, but am remaining bedridden (15 years+). However, my hope remains alive and well, and I am thankful that you are one of the few who got your life back!

So Ph

so sorry to hear/read that ;//

So Ph

recovery stories are always a great read ;D and I completely believe you but do have to add that it míght be because you’re treating the symptoms (very well!) and not the cause, because in my case it turned out to be indeed a lingering mono along with some other ‘bad boys’, once treated things got way worse at first (trembling troughout, my brain feels like it’s getting turned inside out) but some parts of me are already functioning as normal again, yay!!

Sandra Kroeplin-Lilleoien

So you aren’t “cured” because if you were “cured” you could live the life you did before.
Yeah, I THOUGHT I was “cured” for 10 months (12/2010 to 10/2011), to come out that October being WORSE than I ever had been.
Prior to 2002 when I had cancer, hysterectomy, radiation… I am a Mom of 4, active, running 5K a day with my husband who ran marathons, camping, kayaking, horseback riding, traveling to 45 of our 50 states with our kids and our gear. I was a teacher and had summers off at that time and my life was awesome. My husband and I had built a weight room on our property. Our marriage didn’t survive the fallout of the cancer and by the early part of 2004 I was starting to show signs of illness. It came on slow over a period of 8 months this first time, I think. At first I ignored my symptoms just thinking it was a virus. I ended up moving home to ND from TX and by September, I was seeing the doctor while trying to get a job to support my kids. I hid it well enough to get a job at a saw mill. I worked hard for 2 months and lost my job after a 3 month LOA. At that point, doctors started testing me for everything but we are talking rural ND doctors.
By 2006 I was so bad that my 2nd husband took me to Mayo. Moved our family to Rochester to live.

They found SYMPTOMS and to them, at that time CFS didn’t exist. I went through $20,000 in testing (with insurance). They treated symptoms well.
We did pretty much everything you did except the fad diet green juice vegan crap. We did gluten free, but after seeing the apropriate nutritionist we eat raw veggies, (recognizable food) and a lean protein at meals. No processed food. I eat healthy, well rounded meals. A NUTRITIONIST put me on a wholesome diet with appropriate portions.
By December 2010, I was driving a car, running again, lifting weights, I got back to nature and camping, hunting, fishing, kayaking, it was AWESOME. We were moving to California in August and once there I set my sights on training to climb Half Dome. I could do it too. My training was awesome. However, almost overnight I was sick, thought it was the flu for a week and then I was referred to this naturopathic doctor there who, I was told, was awesome. He was. He took one look at my records from the previous 12 years which I sent ahead and he knew exactly what to test me for when I arrived just by what Mayo Clinic neglected to do. Virus panels. I has SIX viruses that I was positive for as “active” and I could hardly move. I’ve gotten worse since then. Every lymph node is enlarged and painful.
At this point we did the Vitamin C IV infusions (which turned out badly, I got sick from them. I’d feel WORSE after it. Then we found out it was spiking my blood sugar to nearly 400!), B-complex shots weekly along with some probiotics, added a couple things to my diet but not getting any better.
We did a genetic test because it looked like I had a crazy amount of folic acid in my system to find out it my body isn’t using it. I am MTHFR positive too. Along with being diagnosed with CFS/ME. He gave me a referral to Stanford’s CFS Clinic where, after 2 years on a waiting list, I finally got an appointment.
The doctor we met with said that I am among the worst cases.
Bedridden, pushed around in a wheelchair when I can tolerate it. Living my life in a darkened room. We have started treatment. I am living 10% of the life I lived before. The doctor said that there is no “recovery”. That people don’t see 100% again and in my case they can see me being 60% at best.

EVERY SYSTEM OF MY BODY HAS BEEN EFFECTED.
I’m having organs slowly failing because of the constant barrage of viruses and when it isn’t the viruses it is the medications they are using to try get me better. I’m dying young. 40 years old and my life… Has no quality. I’m not depressed, I’m realistic.

I agree with the “guest” below me. It sounds like you had depression with a lot of fatigue but not at all in the remote area of what I have.
“All I wanted to do was stay in bed all day”… No way. I have no CHOICE. I don’t WANT to be in bed. This is my LIFE.

Ahmet Gokcek

Look I didn’t have depression and I felt like I was one top of the world with my triathlons, my job and I was happily married (I still am) with two beautiful kids. I felt depressed because I was sick and I was diagnosed with mono along with low adrenals. I felt like I had a constant low grade fever, felt cold tired and sick all the time. If I overexerted myself then then I felt worse. This thing lasted for years and i had to take 3 months off work from my job I felt so bad. I have drawer full of lab tests as I saw 8 different doctors.

If you want to see all my medical tests then I have that at home and like I said it’s enough papers to fill a drawer.

During this time all I wanted to do was stay in bed and all I could do for exercise was walk and some easy yoga.

My change started when I was at a clinic at Reno and somewhere there told me about a raw food vegan diet and how it has helped people cure cancer. I followed it and I slowly started feeling better and eventually I felt good enough to run and play basketball and in 2010 I started competing in running races again.

I not saying a raw foods diet is the magic cure but it helped me and I just wanted to share my story to give others something else to try.

Sandra Kroeplin-Lilleoien

I just don’t think that you got a “cure” IF you indeed had CFS. Honestly, it doesn’t matter to me if you did or didn’t.
Just because your marriage, job, finances etc. are “great” and you are at the top of the world, doesn’t mean that you aren’t depressed. Depression runs in my family and I’ve watched it turn peoples lives upside down but I’ve also seen it be a complete shock that somebody is depressed because they have the outwardly “perfect” life. Depression can also be situational (in this situation, you were sick and it made you depressed) and you may have had situational depression. It’s nothing to be ashamed of. You may have felt better had you taken the medication that you were given.

Now, what I WAS saying before, I too was very sick from 2000 to 2010 and at the end of 2010 it was like a miracle. I had my life back and I was exercising and pushing myself to achieve things that I hadn’t even mastered before. To prove to the doctors I could do it. Then it happened. I got sick AGAIN.

Specialists and world renowned doctors that I have seen recently say that it isn’t a surprise that I’m sick this time and even worse. Because even though someone can have some kind of remission, you’re never REALLY “cured”. Mono (and Gillian-Barre, for example, is caused by the virus Epstein-Barr. The Epstein-Barr virus can be active in anybody’s system and be making them very sick. Then, after some treatments and sometimes without doing anything at all, can go dormant and lay dormant in your system for any period of time. Some people have it lay dormant for months and some people have it lay dormant for the rest of their life. I have nine of those viruses that can lay dormant when I’m lucky. Right now, six of them are active. I am very sick and my doctor, at Stanford, said this is very typical of CFS. That I have a “textbook case” of CFS/ME.
There’s always that chance that you’re going to wake up and start all over again. I’m not arguing with you, just mark my words, it may happen to you sometime. What you had is DORMANT, not CURED if it is CFS.

I would like to know who your doctor in Reno is because I have been living in Reno for two years and have yet to find a competent doctor here. That’s why my husband drives the five hours one way to Fresno to see my homeopathic doctor and he drives the 3-4 hours to Stanford to see my CFS Doctor at the CFS Clinic there.

Any competent nutritionist will tell you that you need and well-rounded diet. People were not meant to live on supplements, shakes, half gallons of mysterious green juices of which you still couldn’t tell anybody the name of unless I missed it and there isn’t anything anybody can say to change my mind on that one. I’ve had the nutritionist at Mayo Clinic, one at the University of Minnesota Medical Center, my Naturopath whose specialty is Nutrition as well as the nutritionist at Stanford.

Ahmet Gokcek

First of all I never said in anywhere in my posts that I am cured. If you read carefully I said i feel better now, I have more energy and I can pretty much do everything I used to do.

Also I hate labels and sticking a tag that I have this or that. My belief now is that we don’t feel well when our cells are not being built with the right inputs and when too many of these cells are not being built well then are body is out of balance and we feel bad. I totally believe in eating the cleanest water/fruits/vegtables/nuts/seeds mostly in their raw state are what are cells need to thrive.

I take supplements as insurance and I too believe that too many is not a good thing. I have a juicer and make my own green juices from time to time and not buy only certain brands because of time. I make my own green smoothies but typically my diet is simple and fruits/greens/veges some nuts/seeds and some quinoa/brown rice.

All I wanted to do was offer others hope with my story because someone else told me to try eating a simple raw whole foods vegan diet and it made me feel better. If you don’t want to try then fine you don’t have to.

It’s such a simple thing to do but people don’t want to do it because they have to give up so much of these addictive processed and cooked foods that they feel life is not worth living without all that junk.

Go watch the videos from Tim Van Orden and he does a good job breaking down why there’s so much toxicity in cooked and processed foods. He’s another person that had Chronic Fatigue/Depression and felt amazing on a raw foods diet.